We did indeed meet the end-stage M.D. today. She’s absolutely fantastic already, even with the limited opportunities in today’s schedule, we have a more formal (if you want to call it that) meeting with her tomorrow morning.
She’ll be great help to get mother the attention and type of care and comfort for the bit of time she DOES have left. What an incredible gift.
Walking into your patient’s ICU room to be greeted by five more sets of eyeballs and ears than normal must be an interesting sight. Particularly at 6 a.m.
Nevertheless, we got all 3 docs in succession. Oncologist, ENT, plus pulmonologist too. Oncologist had still not compared new MRI to old, so I whipped out that handy-dandy CD copy I had on me again. He took it with him to give to the radiologist.
I called his cell again at 11 a.m. to allow time for that comparison, and we’ve got the official word that our initial impression of the MRI last night IS correct, and that we’re indeed in the comfort-care-planning stage.
He’s referring us to a different M.D. that specializes in end-state planning. We’ll meet with her sometime today.
If not, we’re well trained in the art of stalking.
Comparing the new MRI to the old one (thank heavens I have a copy of the old one on CD WITH me), shows that the cancer really has NOT responded to the full course of radiation nor the 2 chemo’s.
The answer clearly SUCKS, but it makes the decision tree far simpler. (Yeah, I’m grasping at straws for the silver lining here, that’s my best effort.) There’s no need to continue fighting the cancer itself, but rather focus on quality for what she’s got left with much emphasis on comfort care in particular.
The medical team (pulmonology folks, oncology folks, etc) are all working to get her airway stable enough to move her to a hospice area within the hospital, so she’ll be heaps more comfortable and we can all gather around to support her with less restrictions.
Then again, she might be happier without us in her face all the time!
(that’s a Warner Brothers cartoon reference if you didn’t already catch it, mother would be proud)
Eureka!
Doing MRI on brain (and maybe lungs) this afternoon, likely within the hour. This will help everyone better know what path she’s on. She’s still driving, we just don’t know what map she’s using.
The battle between the Hatfields and the McCoys is now down to a small scirmish. It’s amazing the difference a few well-placed phone calls can make.
To clarify, we mean about the hospice floor within the existing hospital rather than in hometown or house.
Sorry for the unintended confusion, and thanks for the help thus far—
Surprise, surprise, surprise——-lots of fantastic surprises today.
First, she’s leaps and bounds more responsive the past 24 hours than she has been in the previous 3 days combined. She’s clearly wanting to communicate, so we’re more than willing to listen to anything she has to say, or more correctly: nod. Granted, this could be a short-term “rally”, we realize that. And let’s not be overly flowery either, she’s not exactly giving a thesis on anything. We’re talking about nods and squeezes and open eyes here, but if she’s willing to give them, we’re riveted to receive them.
Secondly, lots of unexpected visitors from the past. Each one is a unique specialness. Thank you to all of you, you certainly know who you are, and your thoughts/efforts/kindnesses do not go unnoticed, by her, or anyone else.
By the way, did I already mention how much help it is to have “Dr Cousin” here? Not only do I want to clone her, shrink her down,and carry her in my purse (that’s another story) but she’s the missing piece of the doctor perspective about the signs/symptoms we’re seeing that we’re not getting from anywhere else. Our decisions are still the same, (and still just as flexible according to the needs of the moment) but it means we’re not 100% shooting in the dark and having to rely on danged impersonal websites for info instead of a real live human. Helps more than we can even begin to articulate.
As for tomorrow and beyond, does anyone know if a Hospice floor will accept someone on a ventilator? (They’re asking for us, but figured I’d poll the lot of you, just in case someone already knew the answer and could comment as such.) She’s clearly wanting to stick around a bit and see faces, squeeze hands, etc, but she’s also quite clearly annoyed with THIS much attention, and also wants to rest.
So, one day at a time. (As if there’s any other way, but still.) Stay tuned….
Lots of folks gathering today. Us two kids, her sibling, lovey, some close cousins, etc.
I’ve been sitting with her most of the morning.
Picking up lovey at the airport shortly.
Rally: She’s been opening her eyes and squeezing tightly on occasion, slipping in and out, but fighting like hell to focus & SEE me when she does have those brief moments. She’s so tired of that tube. Beyond tired.
Physical status: vitals ok I guess. BP somewhat low, resp rate low enough that "cruise control" on vent is kicking in, HR kinda racing then slower, urine now pale lemon yellow but decent output, neck swelling still same. The steroids still making her puffy too, but we all know she could just look at a piece of bacon or a potato chip and she’s puff up & swell.
The nurses were letting me stay past visiting hours, but there was a code in the room 2 doors down so all non-medical staff are out of there for now. I just hope that the sounds of that don’t upset her. Better yet, I hope she doesn’t even hear it.
I want the clock to move faster to get everyone here. But I selfishly want it to hold still too. Time’s a bitch.
It’s probably no surprise by now, but overall, things are NOT good. The past 48 hours has been a steady decline, and she’s been in and out of a comatose state, with only brief (10 seconds or less) flashes of “maybe she’s in there” moments.
“Dr. Cousin”, her hubby (also an MD), the nurses, and mother’s docs (and me too) all think we’re not all that far from some peace for her. All are rallying around for support.
There will NOT be a tracheotomy, as we’re already far far past what she herself wanted (and didn’t want) as far as ventilators go, but at the time she was put on it, it was expected to be only for a short period. Since that time, she’s now not expected to be off of it at all, so of course the situation has changed.
Could be several days, it’s no big rush to the finish line by any means, but at the same time, the reality is that she’s nearly ready to rest. We have to follow her example and be tough enough to respect that, and let her if that’s the direction she’s heading.
Only the tough lady herself will know for sure, and she’s driving this’n, as always.
Today was originally SUPPOSED to be the follow up 2nd set of MRI’s (brain & lungs), plus the 2nd bone scan. The gist being, to compare with the first sets to see if/how/etc the radation/chemo is affecting things (or not). However, with this cellulitis/airway crisis lately, that’s off the table (or so I’ve gathered from the nurses and the chart).
“Dr. Cousin” is coming to visit her later today. She’s burying her mother-in-law today, so it’s plain crapola for her. From the few stories I’ve heard, momma-in-law was a fun lady in her own right–
Sibling is expected to make a visit this afternoon too.
Right now they’ve taken her for a CT of her neck to see about that airway and how the cellulitis itself is doing. So far this morning, she’s been sleeping. Heck, I don’t blame her a bit, sleeping in on a Monday sounds just fine to me too.
It’s been pointed out that the draft post from Saturday that I thought had accidentally gotten posted actually didn’t. But because I referred to it on Sunday, you guys are wondering what I’m talking about. Well, wonder no more. It’s not all that exotic, but I may as well fill in the blanks just the same. The below is from Saturday the 8th.
The title of the original post was “no judgments, just symptoms”. Here it is:
Less squirming. Not picking at her bed linens (or “straightening them”?) like she was before.
uber relaxed, hard to wake
Eyes open when we move her, but otherwise not. Don’t think she really sees us then, more of a reflex
Cold hands/feet. Swollen, but that’s not a-typical for her.
respiration rate is down to 12, so the “cruise control” of the ventilator will kick in at 12. Usually she’s at 14 to 18.
BP is lower, at 101/53. (It’s been 150/100+ previously)
HR good at 98. Oxygen sat still good at 98%.
Temp slightly high for her, at 98.1 (she typically runs cold– in the 96.8 range as her normal)
Dark urine – like strong tea. Output quantity OK, but the low side of OK.
Neck swelling about the same.
one tough lady lives on 
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